Friday, August 19, 2016

Reagan slept well last night and woke up just in time for speech this morning. She did OK, considering she had just woken up, working on her eyegaze and even ate a little. She's been pretty serious today (with a little tooth grinding) but calm. And all day today she's been holding her pees. We had to use the water trick multiple times today just to get her to go at all. When she goes...she GOES..but won't go on her own. Today was also her day to poo (we use a mini enema every other day to help keep her regular) and it was the first time that she didn't go. Not with the enema, not with help...not good. The crazy thing is, her body is still very relaxed, so it's not like the tone is what's interfering with everything. No idea what's going on with that little body of hers. She's been very calm and easy going though. Tonight she wasn't falling asleep on her own and freaked out when we gave her clonidine. Ugh. We just never know when it's going to work and when it's going to make her crazy. Hoping she settles down soon and sleeps tonight!

Waiting for bubbles...

Where's Ryan?

She's soooo long! :)

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About Me

On August 21, 2007 (at exactly 5 months old), Reagan had her first cluster of seizures. She was diagnosed at 6 months old with Infantile Spasms and 2 years later with Mitochondrial Disease. Life has been a roller coaster for us and our baby girl but we've been blessed with wonderful friends and family to help us though this!